Maybe next year…

Friday I had a D&E procedure and terminated my third pregnancy due to fetal abnormalities. We also met with E, our genetic counselor and Dr. T in MFM prior to the procedure to sign paperwork and discuss testing options.

At this point we have three areas we are testing or might be testing:

  1. We are testing tissue from the fetus; a microarray, same as we did after our second pregnancy. The microarray results from our second pregnancy came back normal, and we already know that The Husband and I have normal karotypes.
  2. We are doing a workup on me; a full blood count, MTHFR, all folate indicators (I think there were about three different tests they listed to test folate/B12.) Depending on how the folate levels come back we may need to consult with a hematologist to determine why my levels are so low despite being “flooded” with folate (with the 4mg/day.) We are expecting them to come back low but maybe we’ll be surprised. I really don’t remember the names of all the tests they were doing to do, there was a whole list, but I do know they took about 8 vials of blood prior to the procedure.
  3. We qualify for research study being performed at the Manton Center for Orphan Disease Research at Boston Children’s Hospital. They are newly enrolling couples who have had recurrent loss with abnormalities in their Gene Discovery Core Study. So newly, in fact, that we would be only the fifth couple to even participate. Friday when we met with E to go over all the testing we had a conference call with one of the genetic counselors who works there as a Research Coordinator and they sent over a 13 page Research Consent Form for us to read through. If we decide to participate all they need is blood/saliva samples from us and tissue samples from our three pregnancies which E would facilitate getting to them. They will do exome sequencing, which is the testing that a leading geneticist recommended for us after E consulted with her and sent her our history, but instead of it costing $9,000 and taking five months through a commercial lab it will be free and we may have results a month or two quicker if we participate in the research study. When we spoke to them they said there is typically a 40% chance of finding a genetic mutation that explains the issues. I haven’t read through the Consent Form yet in its entirety, but E recommends waiting to get our microarray results back before making a decision. Her thought is, we don’t want to go through this time intensive testing if the microarray (which will be back much sooner) gives us an obvious explanation. All of this is non-invasive.

So, these are the options that have been presented to us at the moment for trying to find an explanation for all this mess. I feel very empty and “blah” about it. None of this is going to bring my babies back. Even if they find an answer, and can “fix” it or mitigate the risks, do I even want to deal with the possibility of going through this again? Right now I just want to be me again; I want to practice yoga, and start running again, and get on some sort of diet so I can start feeling better about myself. When I’m pregnant I don’t feel like me. I always feel like an alien invaded my body and then it always just ends badly anyway. I want answers for the sake of knowing, and for peace of mind. But I know I might not get answers anyway no matter what kind of testing we do.

Yesterday was our seven year wedding anniversary. It almost seems like an afterthought. Well, it’s not like it was a “big” one. Maybe next year things will be better. No matter how many times I tell myself that I’m not sure I believe it.


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16 Responses to Maybe next year…

  1. Sondra says:

    I’m so sorry you’re going through all of this. ❤ Sending you love.

    Liked by 1 person

  2. Sending you so much love from the west coast….I feel the pain in this post. Here for you if you need to vent or talk. I understand feeling very “blah” about it all…I’m at the exact same point. Happy anniversary and some way we will get through this….lots of love…xoxo

    Liked by 1 person

  3. Sending you love through this difficult time, I wish I could wrap you up in a giant hug and ease your pain. But I know all too well that nothing will ease your pain right now.

    Liked by 1 person

  4. Big hugs.
    To me the research study sounds like a good opportunity, but that’s how I roll. Even if the microarray gives you answers, who knows if that is the full story. Of course, you may never know… And answers aside, after having been on the wrong side of statistics three times, it would be very understandable if you don’t want to try again.
    More hugs and healing thoughts.

    Liked by 1 person

  5. lyra211 says:

    I’m so sorry that you’re having to go through this… again. Sending giant hugs and hoping so hard for brighter days ahead.

    The exome testing also sounds promising, when you’re ready to think about it — it’s wonderful that you’ve got doctors who are scouring every corner to help you find answers, and I hope that the folate panel or microarray helps you on that road. Wow, a 40% chance of finding a mutation that might explain what’s happening to you is actually higher than I’d imagined. Although I understand when you say that even if you have answers it won’t bring your babies back. Thinking of you and your little ones today.

    Liked by 2 people

  6. Nara says:

    I really feel for you. That sounds so difficult. Sending you lots of hugs xx

    Liked by 1 person

  7. Sending you so much love. My heart feels so heavy for you and your babies. That study sounds promising. Answers won’t ever bring your babies back, like you said, but for me at least they seem to help me find a bit of peace in a shitty situation. And maybe they can offer hope for the future…when you’re ready to think about that. Like MPB said, I wish I could give you a giant hug. No one should ever have to experience what you’ve been through.

    Liked by 1 person

  8. As always, thinking of you friend ❤️

    Liked by 1 person

  9. I’m thinking of you and glad you’re getting options and testing but so very very sad for you and your three lost babies.

    Liked by 2 people

  10. mamaetmaman says:

    Sending you hugs and love as you heal. Having my D&E almost exactly a year ago was probably one of the saddest things I have ever experienced. I hope you get some answers so that you can move forward. In the meantime, I hope you are able to surround yourself with lots of warmth and love.

    Liked by 1 person

  11. I just recently ran into your blog – and I send the same prayers your way. Infertility is such a hard journey. Yes, duh we all know that. But going through a loss, after loss – its incredibly difficult and almost life consuming. Its hard to know where you are and where you want to go with all the decisions and conversations that are being had, and what you think the future is. I pray that you can concise a clear path soon. And getting back to feeling like ‘you’ is important too. It took me a few months to rebound after my loss, and sometimes I still think and cry about. Its completely ok to ‘feel.’

    Liked by 1 person

  12. CJandMe says:

    Sending you hugs. So terribly sorry you have to endure this grief and heartbreak again.

    Liked by 1 person

  13. ChickinNH says:

    I am so unbelievably sorry you have had to go through this again. I just could not believe it when I read it. I am glad you are qualifying for the free testing at BCH. My thoughts are with you guys. Life is so absolutely unfair.

    Liked by 1 person

  14. I’m so so sorry for you and your husband.

    Liked by 1 person

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